Your medication list has mestinon as too soon to tell. How much are you taking and have you upped your dose in the past couple of months?
I ask this because I can relate to what you are describing, though it has been awhile since I have experienced this. I wrote my twitches off as my body adjusting to the mestinon.
Love, Becca

It has been more than 60 days since my Mestinon change. I have a weird dosage.
60Mg upon waking wait 3 hours
30 Mg wait 3 hours
45 Mg wait 3 hours
30 Mg wait 3 hours
45 Mg continue pattern if I am up longer.

I am so happy you found a dosing schedule that works for you! It seems like my facial twitches were more frequent the first 6 months (and especially the first month of taking the medication... but I can't recall having many at all in the last 6 months. Hopefully that is all it was for me and is all it is for you (I'm not a doctor though). I remember them being the worst by my upper lip and my eye lids.

Has your Neuro gotten back with you about it?
Love, Becca

Not yet. Hopefully tomorrow.

I am probably not going to be helpful here because I'm trying to figure this one out too. I have twitching, tiny fasciculations, when I am either tired so that I associate with muscle fatigue OR when I have a bit too much mestinon. The problem is I am very hesitant to change my mestinon dose without clear signs that it is too high. I've gotten myself in trouble too many times trying to decrease my dose.
Cathi

My twitching is not related to mestinon dosing as far as I can tell.
I will say that the more symptomatic my MG is, the other symptoms are too.

i-i-i?
t-t-w-w-twitch,
s-s-so,
b-b-bad?
w-w-with?
m-m-mestinon?

c-c-can't ee-v-ven?
t-t-take the s-s-stuff!

It's been so long since I've had twitching, fasciculation that I forgot what they felt like. Two weeks ago they came back in my legs and my left eye. The twitching in my eye pulls the eye shut. I've had eye twitching but never where it shuts my eye. I don't take meds for MG, so I can't blame on that. I think it is from over doing it at work.

I do wish them away for all of us.

I wanted to also mention that last night I was driving home and while I was stopped for a red light, someone rear ended me, my legs got so weak that I wasn't able to get out of my seat. Today, these twitching muscle ticks fasciculation are worse so much worse that my legs are tired and weak. I can't stand or walk for very long.

I saw my neuro yesterday for checkup.Mentioned about my twitches which are mild, random all over (face, arms legs back). She said they are probably due to mestinon. However if I experience muscle weakness along with it then i need to let her know because that could be sign of another auto-immune issue. So you might want to let your neuro know!!

Could your mestinon dosages be reduced, somewhat? Slightly?
That - might give the same beneficial effect.
Yet lessening the problem with muscle tics.
(We've all become experts, at cutting up pills, huh?)

I mostly hv leg/ arm aches at night, more so my legs. Not much twitching, I think God spared me some on that because as my 19 y.o. Son was w/ me for my CT he said "my eye won't stop twitching!" I looked over & it was twitching away, he has no known medical reason for it, & I sure want to keep it that way!! I said ..oh, it'll go away probably just stress,lack of sleep, just a "who knows thing" it'll pass:))

Well spoke with the doctor's office. Because it has been more than 60 days since med change and I have had a small surgery, cold, stress etc. and I have been more tired and clumsy he opted to up my dose a little and keep an eye on things. The twitches don't really bother me too much just wanted to make sure it was not a negative change in my MG.

Mestinon changed from:
60 mg 3 hours
30 mg 3 hours
45 mg 3 hours
30
45 etc.

to:
60 mg 3 hours
45 mg 3 hours
45 mg 3 hours
45 mg 3 hours
etc.

We'll see what this change does.

Kimber

Sounds good.
Do you get the Elvis impersonating upper lips twitch? That one cracked me up when I would get it!
Thank you... thank you very much!
Love, Becca

I have a theory and until a better one comes along, I am going to run with it. I will check it out with my neuro next week.

I have been stable (or improving) with the same prednisone and Mestinon dose for a couple of months. I am tapering my prednisone and beginning to have the early problems including cramping and twitching, suggestive of too much Mestinon or a need for the body to adjust to the dosage of the Mestinon.

Reading posts it seems that when we are doing better we can tolerate more Mestinon and when we are doing poorly, less.

So if our receptors are occupied with antibodies (doing poorly) and the extra acetylcholine has no place to go, it can get in the blood stream and up to mischief as if you were taking a bigger dose of Mestinon.

If the receptors are free or only partially occupied (doing well) then the acetylcholine is free to do its job and the blood stream is spared the extra burden.

The practical application of the theory would suggest that for those who are having the twitches and cramps related to Mestinon, the best thing would be to take smaller doses more often which would allow some benefit without reaching higher levels of acetylcholine in the bloodstream. That of course assumes that the twitches and cramps are related to Mestinon. So if you get worse with the increase, Kimber, you could try your former daily dose, but taking it in smaller amounts more often. I don't know whether it would help, but I think I am going to try it with mine. Will let you know. (Crazy, take less Mestinon at a time when you are worse and more Mestinon when you are better--well it is MG.) b.